Non-Results?

So every 6 months or so I get all morose and assume I am dying when I have my MRI's and am forced to see the images of my atypical brain and spine splayed across a huge computer screen at NIH. Sometimes I look and want to get upset, but it seems I would be overreacting given the general apathetic professionalism the doctors maintain. "Look, here is your brain, we can't count the tumors so just be careful mmmmkay? If you die, please be sure to let us know so we can replace you immediately. Now time is money, keep it moving." I ask what a spot is and they look at me patronizingly and tell me that is just more edema, don't worry, if it gets too bad we'll shave your head, saw it open and cut everything out. Now buh-bye, oh and make sure the nurse has your current payment information."

I seriously doubt any doctor actually knows the meaning of the word "stable." 3 months ago I had a brain MRI here near home just to check the "possible edema," you know that massive cloud of debris smashing up a huge chunk of my brain? I was told I was stable, I looked at the screen and remarked it did not look stable to me, but was promptly shooed away by a tech and told not to strain myself looking at the pretty pictures. Fast forward to this week at NIH where I was told the edema has now spread to both sides of my brain. This news was delivered with a practiced straight face, and I took it as such that I was meant to simply nod. At this point they tried to put me back on steroids and I started laughing. I told them oh we have done that, repeatedly, different types at different doses. They made me manic and unable to get through the most basic of tasks. Yet here we sit, with more swelling, so no I would rather not continue the crazy medication that is not working at all. I told him the medication I take for my eyes has helped tremendously over the last few months, and not that he had asked but I was able to see much better on it which to me signified less pressure. He nodded his assent and we shook hands and said good bye. At this point he went back to his life of delivering news to patients with an unreadable face, and me to mine in the corner of my couch.

I am home on the same medications I left with, with a most likely shortened prognosis, not that I was offered a prognosis or options beyond steroids. It seems odd to me that while the simplest of tasks can frustrate me to the point I want to cry and can't speak, going through the motions of neurological exams and results feels completely ordinary to me. So the doctor and I have that in common at least.

Change

Before my eyes even open I smell the remains of a fire burning out and hear the roar of the sea nearby. Warm water laps at my toes and beneath is something as smooth as silk. I slowly look and see exactly what I expected, a vast expanse of black sand so smooth it cannot stick to the warmest of skin, running along a deep blue ocean without waves as far as I can see. The horizon is lined in pink and a soft sun you can look directly into warms me to the core. A deep breath draws in air, thick and sweet, without a hint of the ash the fire should have caused. The water begins to recede and an empty day settles on my chest. There are no numbers to count or time to pass here, no people who speak and nothing to need. Here I exist and nowhere else does. I remember things from before of course, but they seem of no consequence now. I do not ruminate or miss, I have left everything behind and live in a seclusion so thick that change seems both inevitable and impossible. A sigh escapes my lips and rather then explore all of the things I have seen before I simply lie back down and continue to exist. No dreams disturb me, for there is nothing to desire. No nightmares either, for there is nothing to fear. Each moment lies undefined and every step lacks depth. Finally, I place my finger on my lip and without further thought I bite myself as hard as I can. Warm blood trickles down and I realize I have not seen red since arriving wherever I am. I have not felt pain. Until now. Change has come.

Sleep & Run

If I could describe the last month in one word it would be, "Sleep." I fall asleep early, wake up and hustle the kids to school, then fall back asleep until it is time to pick them up. I grab them back from school and try to catch up on the insidious pile of laundry tumbling out of the hamper, do a round of dishes, wipe the bathroom down and rearrange some pillows. Then I lie down exhausted and try to answer homework questions from my Hello Kitty cave before throwing together a dinner. Every day I feel a little better. Every doctor's visit I get news, some good, some bad. Nothing tragic and nothing life changing. Sometimes when I am at the store and JT is helping me find what I need I stop and look around and for the millionth time I wonder what it would be like to be them. The same answer generally bounces back at me, and it says I wouldn't want to be. I like myself, oddly enough I love my life. Besides if I wasn't me I wouldn't have the family I have, and I don't know anyone with a family I would rather have. That may be the irrationality of human nature speaking, but I am comfortable with that.

In fact I am generally very comfortable lately. People have disappeared, as I knew they would, and I just can't muster the empathy to care. I've had the same best friends for a very long time and they aren't going anywhere. My family has proven themselves, not that they needed to, but time and again they do so anyway. I am surrounded by people I trust and love. People who handle everything because they want me to just rest so I can get better. What more can a girl ask for? Probably a lot of things, but no matter what you get there is always something else to want, so I choose to just be happy as I am.

I was definitely happy last weekend at the Long Beach Marathon with the NF Endurance Team!! My fave weekend of the year (right up there with Christmas, don't judge, I love fudge and presents.) So our entire team kicked butt. JT did the kids' run with Haley, and smashed the mile in 9mn! Paul's little brother Thomas kicked the 5K's ass, I mean he is like 14 and finished in 21:30. I wanted to adopt him and train him I swear. Uncle Franky and I stuck together for the 5K, for my safety and his motivation. I yelled at him the entire last quarter mile, then we ran into Sarah Johnson, and I grabbed JT from the cheerleaders, and we all ran in as well as we could for a big finish. It felt wonderful and I was proud of everyone involved!

Now its back to life as usual, whatever that may be for me, it works.

Paring Down to Basics

I have been procrastinating on writing this blog for days, a feat in itself as I am incredibly limited in my choice of activities. Paul has been taking me for Hyperbaric Oxygen Treatment in Irvine as per Dr. Duma's advice to hopefully heal this radionecrosis in my brain and get my life back. I am ridiculously blessed to have access to this level of care, the means to attain it, rides to get there, people to take me there and back and care for me. As I lay in my little chamber inhaling the oxygen and visualizing healing bright light helping my brain cells stitch back together, little voices nag at me with negativity, I cannot give in to them. I have to just be positive. I have to be a hippie and read the Dalai Lama and not eat meat and drink tons of water... if I don't do those things, I don't know what else to do. So I take my medicine and vitamins, and when I find myself doing nothing I get up and do SOMETHING... even if to most it is nothing. I've been walking after Mica around the complex on her bike, trying to cook a real breakfast every morning, and washing a few dishes. I take my time caring for the kids, read them extra books, tuck them in extra tight, and then try to squint through maybe one show with Paul before my eyes just can't handle the strain anymore and I lie with my eyes shut pretending such a slow day has actually tired me out when all my body wants to do is RUN.

Meditation, prayers, deep breathing... at some points I want to say cut the crap, let's get real, and just throw something!!! But I have people... little people... who rely on me to be their Mommy. I have Paul who is bearing just as much stress as I am... and I have myself. Yes, me, I am worth the effort. Even if I had no family, nobody to love me, I like to believe I deserve to try for me. So I will.

What that means for me... and for those in my immediate circle, is that as of now I am on a needs-to-happen basis. I am stepping down from my role as Team Captain of the Long Beach NF Endurance Team. I will be attending, and walking the 5K, and cheering for all of us as we fight together. My co-captain John will be handling logistics. He is awesome and I am really lucky to have my good friend running things so I do not have to worry.

My fundraising page will remain up but I am not going to be going out of my way to do anything right now, emails, organizing, all of it feels like a challenge. This thing in my brain is like a burn, and while I am trying to maintain that it WILL HEAL, as of now I basically have brain damage. I panic, I can't drive, I pass out, things confuse me. I would be able to deal a bit better if I could just get comfy with my Hello Kitty blanket and pass the time in bed playing with my family and watching TV, but Paul has to work, the kids have school, and I can't see the TV. I feel scared and trapped and will definitely be adjusting, and learning who really cares and sticks around by just keeping me company so I don't lose my freaking mind any more then I already am. I don't expect most people to stick around, it is how life goes. We all have our own issues, as my Uncle says, "A tissue for your issue?" We come into this world alone, and we leave alone, and the only way to be happy is to focus on how much compassion we can give, and not worry about how much we absorb. I constantly see people talking about how disappointed they are when people don't DO things for them, reach their expectations, care. All we can do is control our own moods, and every time we feel alone, give, because its the only thing that cures the human condition.

Yes, I am all wise and yoda-like now. I blame the meds. Meh.

So to bring this all together for those of you who do want to do something:

Sign up with the NF Endurance Team and run for the cause at www.nfendurance.org

Come visit me, I love the company. Please excuse the mess, duh. Emails, texts, whatever, I am still here people.

If you are one of my kids' friends' parents, they are available for playdates and can use the escape.

If you pray to anyone, throw some in for me if you can and throughout the day if I pop into your head picture a bright white light cleansing and healing me.

As always you can donate on my fundraising page at... http://www.active.com/donate/nflongbeach2011/Olivia

NEVER GIVE UP

PS if you receive the link to this multiple times, my apologies, same goes for typos.

Inching forward without movement

I am in no mood for verbosity, I am blessed to have a lot of people asking me how I am doing but not really able to see well enough to text and email everyone back. So I sit and blog, and share it in one place, and when people ask me I direct them to my blog to be read as they wish... or not. I am hoping by updating it often, and pouring all of my negativity and hope into one bright page I can barely see, to purify the rest of my conversations from excessive morbid tumor talk. I caught myself being a total Debbie Downer last week at my friend Val's bonfire. Looking back, I probably talked more about NF then anything else that day, and that is not the life I choose for myself, or the conversation I wish to trap people in. We all have our cross to bear, every person you pass has a story of heartache. Its the human condition, and I refuse to be defined by mine.

Over the last couple of weeks I have been attempting to adjust to my lack of vision. I can see, but it hurts to focus, and so I try to conserve my time spent doing anything that requires me to strain. So my follow-up MRI was done Monday, and Tuesday I sat down with Dr. Duma. He does not feel going blind is inevitable, because the swelling is contained and nowhere near my optic nerves. The swelling on the right atrium of my right lateral ventrical is just nuts. If I remember correctly from the Biology class I actually passed in high school, the right side of the brain controls the left side of the body and visa versa. So the vision tract fibers lie across the atrium, and the right side of the fibers are where the swelling is, so the left side of my vision in both eyes is affected. I can't see anything to my left, and people walking up on that side startle me, but the right side of my left eye is fine. So I have these two right-sided windows struggling to work together, with a chunk of blur and nose in between, and they are becoming increasingly sensitive to bright light. Dr. Duma now agrees there is some necrosis happening, which is when healthy brain cells start dying off from radiation spillage. Radionecrosis being the technical term. On my last visit he did not yet want to commit to that diagnosis and sent me home to just find my balance and hope the swelling went down. As of this MRI the edema is still a problem and not shrinking on its own. Dr. Duma doesn't want me on steroids long term, as they are just horrible to be on, and he believes pulses of treatment may help. So I'm back on steroids for 2 weeks, still on the anti-seizure meds for the small eye seizures the swelling is causing, Vitamin E and a blood thinner to promote blood flow and healing to the area, and have been referred to a doctor who does Hyperbaric Oxygen Therapy in Irvine. I know absolutely nothing about it yet, but I consult tomorrow, and will share what I learn at that point and if we are moving forward that route. Most likely, yes, because I trust Dr. Duma's opinion. When I chose Gamma Knife for all of these tumors I jumped on the ship, and I'm in, all or nothing. Dr. Duma has kept me running, breathing, and seeing this long, and prolonged my Mom's life by probably 10 years. No matter what I do these tumors will grow, it's the tumors, not the treatments, that are at fault. I refuse to be cut up and filleted until there is nothing left of me to move, and I am a flickering light trapped staring out of a corpse. Instead I do my best to be aggressive in my treatments while passing the time just like everyone else. I do laundry, read to my kids, play cards with my husband, cook us all dinner, have friends over. I push a button, I fold a shirt, I chew my food, and life inches forward. At times it is mundane, at others poignant, but mostly just normal. I sleep a lot, and nobody wakes me up. Paul and I don't really bicker. The kids try to do little sweet things without being asked, and together put a blanket over me when I fell asleep on the couch. Paul took two weeks off to just breathe with me, and sometimes I walk in to find him washing dishes. We watch movies in increments, until it hurts too much, and then both fall into bed and sleep as deeply as we can into dreams where life is abnormal, because nothing is broken. What would we do with life if there was nothing to fix or fear? What would we hope for, or learn from? When I wake up I am happy, my kids are usually tangled in our sheets and light cuts through my blinds warming sections of my legs. Moments are all anyone has, and I'd rather have mine then anyone else's.

Blur

The edges of my life are blurry, purpose and intent comingled with days empty of accomplishment. I squint at the TV or computer, and then struggle to focus on the sea of people in a store, before finally looking to Paul and seeing only shapes and movement as he squeezes my hand to reassure me. He teases me mercilessly, and I laugh as only we can, at the ridiculousness of being 28 and deaf, and increasingly unable to really see anything from far away or focus on anything up close, on my growing list of old lady ailments, at my inability to do most of the things I love, but my odd ability to constantly find new things to love, that are then taken away as well. We laugh as he talks and I cock one eyebrow in a very yoda-like way, as though I understand it all, even without having any idea what he just said. I look away and squint, he looks the same direction I do, and squints, and we both erupt in hysterics. Then there are the moments I panic, when I realize even if my body gets strong enough to run again, I would be terrified to run not knowing where I am at all times, and possibly nauseated by the bouncing horizon I used to direct my prayers toward and now have to sheild my eyes from. Then I remind myself I am overreacting again, of course everything will get better, I will run, and I will see. Maybe not quickly, and maybe not well, but jogging and squinting are fine substitutes. I push away the fear until it floats away and I am distracted by another thought, because if I let it rise up it might drown me, and I can't really swim anymore.

My MRI to check on the brain swelling has been moved up to Monday, because of the aforementioned vision issues. Last week I spent a couple of days with the kids and my Nana swimming at Harris Ranch. This weekend I am taking a family vacation to San Diego with my husband and babies to live my life the way I want to, like everyone should. I'm going to have fun, and Paul has promised to stick next to me so I don't get lost... again. I get to "see" some of my family in San Diego, stay in a hotel on the beach and follow my kids around Legoland for a day. Reading over this to edit before my Dad attacks with his virtual red pen (in my defense I CAN'T SEE)I realize that being ill has afforded me a sick sense of entitlement (pun intended.) Every day people tell me have a glass of wine, or just eat whatever you want, or go right ahead in line, or take a nap at 11am and leave the dishes be, just enjoy yourself, because you DESERVE it. It is a dangerous concept, especially when there are children involved. I wont have my children growing up thinking that when hard times come it is acceptable to just let life slip by. Blurred or not, life goes on, and we all make the best of it.

What kind of mother would I be if I didn't mention JT started 4th grade and Mica started Kindergarten this week, and they are both amazing and adorable and the lights of my life, and everything I do, I do for them (cue Bryan Adams song.)

JT is not my Uncle Eric

We have been living in triage mode for the past week since being scared by the huge blotch of swelling on my MRI image at NIH. Now that I have been put on medication to control the situation and am able to look forward more then a week in my life, I have to deal with the rest of the news we received at NIH.

As self-centered as I have been over the weekend for personal preservation of my sanity, JT did in fact go to NIH for exams as well. Pretty much everyone in my NF2 family has started with spine tumors around the age of 9. I think all of us close to the situation had begun to mentally prepare for JT to have a spine tumor either this trip or in the next couple of years. Spine tumors are no walk in the park, and the idea of my baby's beautiful smooth brown back being cut into, the muscle being cut through, and his tiny baby spine being touched, makes me nauseous to the very pit of my stomach.

So on Thursday when JT saw the ENT at NIH he sat looking at his brain MRIs a bit too closely. I didn't like the look on his face, I didn't like how he kept switching from series to series throughout the scans, zooming in and out and rotating. Finally, he turned to us and told us that JT has an Acoustic Neuroma*. The ENT was very conservative with his diagnosis, stating that it could be a swollen blood vessel. Paul held my hand and held me back, because we have been together long enough that he knows what havoc "possible tumors" have wreaked throughout my life.

So I held it in, and I looked at JT and took a breath. I waited until we saw Dr. A the next day for our big final appointment, and I asked his opinion. Apparently, JT's hearing nerve is already swollen. That breaks my heart. Sometimes, these tumors grow on a nerve, other times like my own, they weave themselves in, making it virtually impossible to simply remove them. All of JT's hearing and balance tests came back great, and the images are so small, there is really nothing to do right now but wait for the next MRI to begin to gauge how aggressive this tumor is and what our response will be. Just waiting, and looking at my baby everyday wondering how long I will have him and how much he will suffer.

Every NF2 patient is affected completely differently, each genetic defect, each tumor, each treatment is completely independent from all prior history. That is what the doctors tell us. Those of us with familial NF2 have seen different. I have pretty much followed the same pattern as my Mom, and any regular Fabulous Running Mommy readers know that a recurring theme of mine is to remind myself that I am not my Mother. My Mother also had a brother, my Uncle Eric. I have fond memories of my Uncle Eric sprinkled with uncomfortable images that scared me as a child. My Great-Grandmother Leticia, who I called Titi, spent a large part of her life caring for my Uncle Eric and Grandma Norma as they lay in hospital beds in her home wasting away from NF2. She was

an amazing woman and dedicated her life to their comfort. I would visit, and I remember walking in as she situated my Uncle, and seeing his long pale limbs as she adjusted his blankets. He was so skinny, and completely hunched over from the spine tumors. Tumors that started at a very young age. He had eye tumors, and although imaging was not what it is now, he had Acoustic Neuromas at a young age as well. His eyes bulged from the tumors and he wore a patch over one, and I distinctly remember him being so tiny that when he sat in a wheelchair he didn't even fill the seat. He was as small as a child in that big wheelchair, with a grown man's mind trapped inside of him. He was fiercely intelligent, and in

his last years he found God through becoming a Jehovah's Witness. It filled his heart and although I have been told he was an angry person at times, I only remember him as loving and curious. When I was in 2nd grade the teacher called my name to go to the front office. For no apparent reason I thought my parents were pulling me out to take me to Disneyland. I was a ridiculous child, seriously. I was so excited, being called out of class was really special at that time, my parents both worked and I was happy to see them. I believe it was only my Dad who was there, which was a bit disconcerting, and he was way too solemn for a trip to Disneyland. Still, I was my usual chatty self, and talked his ear

off the entire way home, throwing question after question at him. When we got home I remember sitting on our white sofa across from he and my Mom, who was very quiet, and being told that my Uncle Eric had passed away. I don't remember any reaction, my memory goes blank for years after that. I knew what death was. My Grandma Norma had passed away a couple of years prior. I just remember being told he was gone, and knowing how young he was. In later years some of the blanks were filled in. I was told that at the service I was too young to attend all of his fellow Jehovah's Witness members from his hall filled the church, it was standing room only. His battle and faith were an inspiration to them all. To this day, knowing that about him, fills me with a pride for my Uncle who lived such a short and tragic life. He was only 27 when he passed, but he didn't curse his fate, he found God and filled himself with what he could. He never had a wife or children, o

r many friends until he joined the church. His childhood photos are slightly off, his eyes not quite staring straight ahead because of the tumors. Just like JT's.

JT is not my Uncle Eric. The fact that his tumors are starting to grow while he is so young does hint at a severe case, and that terrifies me to my core to look at my JT, my angel, and think of him going through the hell that is a severe case of NF2 before he even starts high school. Will he be deaf? Will he lose the rest of his vision in his good eye from the small tumor he has in that one as well? Will he have a paralyzed face and give me soft kisses that simply press upon my cheek without a pucker as my Mom's did? Will he struggle to communicate and make friends, and question the commitment of time involved in earning a college education when compared to the life span he may not be promised? Will he simply s

nap as I did and be lost, would he be lucky enough to find his way back as I did? Will he be able to work, and support a family, and have a wife who can handle having a husband she must care for? Will he have children and will they have NF2? Will he live long enough to see those possibilities?

And so it seems although JT and I live different paths, we end up on the same one for now. We simply can't worry about the future, we have to live for today, and love each other as fiercely as possible for as long as we can. Neither of us will be held back by long gone fears that really have no true hold over our current situation. We can learn from those before us, and be brave and filled with promise today.

*An Acoustic Neuroma is the hallmark tumor of NF2. These tumors grow bilaterally on the hearing, balance and facial nerves. They are why I am deaf and have horrible balance. They are why my Grandma, Uncle and Mom, as well as many of my best friends are Deaf. They are why so many of my loved ones and friends have facial paralysis and cannot smile. Treatment options include surgery, radiation, and hopefully medication if we all keep supporting research for a cure!